Two months into 2013 already

2013 began for Sarah on rather a poorer health note!

Last summer we had a fantastic holiday to Romania; when as a family we were able to travel and have fun in the sun all together!

Sarah coped very well.  It is a bigger challenge taking Sarah on travels now but one we longed to do and she kept well untill the last day of it.

The months since the holiday have been similar to what she went through before Spring 2011 in that Sarah has again consistent periods of Non Convulsive Status(NCS) seizures.
The difference in the 1+ years without NCS for Sarah was great, as she learnt more in this period and was all the more brighter and physically steady and independant. We all benifited from this remission spell.
Sarah was then able to sleep alone more, and our night nurse finished to let her be in her own room and Ian and I began to get good sleeps!
 
What’s changed?  Well she has started to take longer and stronger and more frequent night seizures (she was never completely free from having the odd night seizure but short ones!).  As they increased we began to see the NCS creep back into the picture. This is a particularly difficuilt type of seizure as it stops Sarah functioning normaly, her speech goes her head droops and she is very very unsteady or unable to co ordinate herself. We need to assist her with everything.  The periods of NCS have become more and more frequent and as in the past there is not a medication that stops it, apart from a little clobazam which is strong drug that also affects her behaviour badly!  Clobozam is an addictive drug and the more you have it in your system the more you need of it to work and the more you have of it the worse the behaviour becomes!! Its a very short term answer with no long term beneifit!

At the moment we are using this drug to give her a period of relief however the gap has become shorter. Since the last two months getting a spell of only 5 good days without the NCS seizures.

Our neurologist switched the times she took her anti epileptic medicine Phenotyn around in November 2012 in the hope it would improve things; however we are not seeing any change.  Now the neurologist wants to see if the tablet form of the medicine Phenotyn, that was working, rather than the liquid form of it will work better.

It is very difficuilt to go backwards after such a good spell for all of us. We see how Sarah herself notices her seizures much more having been free off them and this is hard she really does try hard to keep going admidst her wobbles and sore heads!

Thanks for sharing in keeping up with how Sarah is getting on and thank you for your ongoing prayers we will post how she is getting on in the Spring of 2013.

Good news on NCS - Early June 2012

Following on from her bad day, it was wonderful for Sarah to sleep 13 hours, what an answer to prayer as she woke up no next day having had no seizures over night and so much better!

Her speech was back and her co ordination so much better. She was not so pleased when I said you will have to stay at home with me today to rest.

With stability I was able to get her to her dentist appointment, where the dentist confirmed a sore mouth and a back molar cutting. This is a relief as its at least a reason for seizures as so often in the past cutting teeth or loosing them has triggered seizures!

Having had just one rescue medicine dose, sleeping so long and knowing there was teeth problems we held back on giving further rescue tablets to be able to avoid side effects ( its not easy to forget the awful agony of the side effects of the rescue medicine.)

We have been given anaesthetic spray for her sore gums which are suffering also as a result of a horrible side effect of her current anti-epileptic medicine. Its hard, a medicine helping her seizures yet the side effect causing pain that triggers another type of her seizures!!!!!

We are aware how quickly Sarah's seizures can come and so we continue to pray that her night seizures will stay away for a while to give Sarah an opportunity to regain strength and that her teeth will come through quick.

Thanks for keeping up and for your kind thoughts wishes and prayers

Ian, Rona and girls xxxx

The return of NCS - Late May 2012

Sarah over the last weekend has had a build up of stronger and longer lasting tonic clonics in her sleep.

Today she woke up in Non-convulsive status(NCS). This is where she is extremely wobbly unable to co ordinate her movements, unable to speak without slurring her words and so its difficult to understand her. She is unable to hold her head up much and is in what looks like a drunk stupor. It is caused by non stop seizure activity going on all over the brain.

We took her to hospital where we would have hoped her bloods would reveal her medicine levels would be low in her bloods and an IV infusion would boost her. But unfortunately not, her levels were good suggesting that these seizures have appeared again after a year and without reason we had to look at using rescue medicines. We are very anxious about this as most of the rescue medicines are addictive and cause seizure activity on withdrawing them! Also Sarah in the past has regularly experienced horrible side effects mainly poor behaviour and poor concentration and deterioration in cognitive learning.

We have experienced such freedom from all this for over a year it seems so hard to be going back wards again.

I have got a dental appointment tomorrow for her as she has been complaining about a sore tooth we are aware her epilepsy can be triggered by pain?

Also Sarah has been more active as she has been so well.

It is also a reminder her condition is a difficult one and we would value your prayers at this time an ongoing that she would not remain in NCS and that the rescue medicine would be short term and without side effects.

will keep you posted

Thank you for your care and prayers.

Spring 2012

Nearly coming to the end of another School term.

 

Sarah continues to be well. We are having the odd day where Sarah has some seizures and then her speech is poorer and she becomes very wobbly and needs our assistance with all her needs.

 

This seems to happen after a very busy day or over exciting activities through the week. However with a lot of rest and checking the medicine levels Sarah is bouncing back from these periods of non stop seizure activity.  Where it has been a bit longer than 48 hours she has to get her bloods checked and if necessary her medication adjusted.

 

This pattern of health is very encouraging, not encouraging having seizures but that we see recovery with out admittance to hospital. Sarah is also very aware now of her seizures saying things like "oh no I am wobbly or my hands are jumping"! We admire her determination as always to battle on regardless only frustrated at falling over or dropping items while trying to carry on eating etc, or not being understood as her speech becomes slurred in the midst of seizure activity.

 

Another positive is she has attended almost every day of the past 2 terms at school. In school she is more active in all activities participating with understanding and even contributing freely in the class.

Through this time of Sarah being more well we are also able to see just where she is at.  It is obvious that Sarah has special needs but we can see that she has also been able to retain some of her learning from periods between seizures.  Its encouraging she holds on to skills learnt. Sarah is not able to read or write but has suddenly showed she can emotionally express and understand feelings and read certain situations.  We did not see this for the past years where most of her communication has been to express her needs only. Sarah is a thankful wee girl always expressing how nice people are to her and her favourite phrase is to say "I had a lovely day, what about you?".

 

Getting used to socialising out with school or home can be a difficulty, but being together as a family in church again is a blessing, Sarah has even gone back to Sunday School.

 

We are very aware that Sarah's condition is long term and not curable and having met now with parents with children with LGS we can see that the future may well bring more difficulties. We know Sarah has been and is so prayed for and this is first and for most her greatest help and strength. Even as we write she having just dropped off to sleep has taken a tonic clonic seizure, how wonderful to know "He who watches over Israel never slumbers or sleeps"

 

Sarah's medication remains at quite low doses and so we are not having side effects a big bonus for behaviour and alertness!

 

We are still awaiting news for her referral to London for assessment by the National centre for young people with epilepsy.

 

Rona has become a volunteer with the charity Mathews Friends, they so supported us and brought funding for a ketogenic dietitian for Raigmore. (Sarah was on the diet for two years). 
Rona will be a link person for the Highlands and so we would like to get a support group happening for parents with children with difficult epilepsy in the North. Please look at Mathews Friends web page to learn a a bit more.

 

Please keep praying for Sarah we are so Thankful for her current good health and progress.

Anna Talitha and Elmarie have all had an easier time and these past months they have had a wee sister not an ILL sister, that's been great for them in all kinds of ways not experienced for Five years!!

Moving Ahead - End September 2011

We have got so used to interruptions and delays in our family due to careing for Sarah and hospital visits, but this delay in writing an update on the blog is actually as we've been busy with lots of lovely things!

 

Sarah is such a different wee girl these days, full of conversation , interaction, role play, physical activity and singing.

Her appetite and ability to sit with us at the table and feed herself is great, no excess drooling and poor coordination.

 

In school she is learning and retaining information.  Her recall is so much better. We get regular updates of her day at school but what's also lovely is she is so keen to hear all about our day e.g. "so Dad how was your day at Blythswood" 

Her walking is so much steadier and her co ordination is improved.  She has gained confidence in her physical activities outdoor play swimming and even horse riding!

 

What about all those seizures so have they gone?
Well they are not all gone and in fact Sarah continues to have regular seizure activity through the night, if she has some early morning ones they do leave her groggy first thing and at times wobbly.

As this was not the case for the first two months on Phenytoin we discussed it at her recent visit to the Neurologist. She has suggested to shift the dose so that Sarah receives more of her medicine at night so we hope this will cut out some night seizures and also help with her sleeping. She has been poor at falling asleep.

Interrupted nights are hard but we hope we can get stability back.  Sarah is aware now of the seizures as she feels the effects and talks about it.    

 

Our medical team continue to support the referral to the London Center for Epilepsy for a full assessment on Sarah but as yet our Highland Trust has not given approval.  Please pray we will receive this, as we so desire to have it and to learn from such an expert team dealing with complicated cases such as our darling Sarah.

 

Many Thanks

Thursday 4th August - Summer Holidays 2011

Sarah finished off her school term in great health, so for a change this year she was able to participate in all the end of term fun activities.

Seizure activity has very slightly crept back into some of her nights, early mornings. 
Her medication was slightly adjusted at the start of the holidays.  This has helped but as the seizures are not having to much impact, we do not want the medicine to go up to much as this is when side effects could cause her problems.

Sarah is aware she is having seizures and bad feelings etc are interrupting her sleep.  She will say her head gets sore. It is a new stage where once she knew nothing different and battled on in the midst of constant seizures, she now realises the difference being well and unwell.

Something else new for Sarah, is that she is out playing on her much loved tricycle, joining in with other children around us this summer.
This is so great after so many holidays spent in hospital or unstable at home!

Sarah has been able to go away to her friends for the day without mum or dad in toe, what a boost for her.

She went to our Church summer Bible club and again joining in on the activities there without her mum!

All this improvement has brought transformation to our home and our lives but wonderfully to Sarah.

Hope all of you are having a good summer thanks for your continuing prayers. x

16th June 2011 - Prayer of Thanks

Pheyntoin since it was adjusted on the 23rd May has kept Sarah stable and seizure free.

A Prayer of Thanks to God was given by our Minister in Church last Sunday, for this period of great health, and Sarah who is so often absent from Church was able to be with us there.

Life without seizures is so amazing, no hospital visits, no nursing routines at home e.g. who will feed, bath, dress, undress, give medicines, watch, care etc etc that has been so much part of our family routine for a long time.  Sarah is currently saying "I can do it myself!" most of the time.

Sarah is a play mate again for her younger sister Elmarie and this has brought such delight to both of them.

Sarah is calling Elmarie her best friend and Elmarie is proud of being able to make up good games for Sarah to follow (for her, its equivalent to having a younger sister follow after you!)

So its all wonderfully good to see.  Yes this is a light on for us all as a family and for Sarah a real quality of life.

Sarah has special needs and she has needs that a child her age would have grown past.  Her attention span is lower, and so demands a lot more attention. She struggles to cope with routines and people outside those she is used to i.e. school and home. Her reaction is often to be overactive or  show destructive behaviour when out of her routine. This is especially hard when her sisters have friends over and her behaviour is challenging.

Medications and seizure activity have accounted for a lot of Sarahs behaviour patterns so in this clearer period it is useful to know and assess just where Sarah is at in her all round development.

School this term has had lots of fun, outings and learning.  Its just great to be getting news of school from Sarah every day as she is able to recall and describe situations. 
A highlight this past few weeks has to be a whole afternoon play and have tea with her lovely friend Jessica. 
They both went to nursery and started school together and although Sarah had to leave mainstream they remain good friends.   A very precious friendship that lets Sarah be independant from us for a short time.

We will enjoy this period of seizure freedom for how ever long it will last.

We are praying, that while Sarah is in a period of good health, she will get the opportunity to go to the Epilepsy Centre in London again, so that she can have a full educational psychologist assessment.  This will give a clear picture of her learning and understanding capabilities.

At the moment she has been recommended for referal and so we wait the approval from the NHS Highland Trust.  Please pray for this.

Thanks again for all your prayers and join with us in thanksgiving to our Heavenly Father for this settled spell.